Dr. James Thobaben: A Useful Tool for End-of-Life Decision-Making

At the end of modernity, human life is trivialized. People treat others as mere objects, rather than the imago Dei. Face-to-face conversations are replaced with tweets or, even worse, with the digitally-altered ‘selfies’ posted to vanity blogs. Life-long covenantal relationships are displaced by a series of passing interactions with casual strangers. Human stories once began with ancestors, then on to conception and birth, childhood, adulthood, death, descendants, and – hopefully –resurrection. Increasingly, at the beginning of postmodernity, biographies are just a sequence of impressions incoherently assembled.

The end result of all of this is a sense of meaninglessness, what is called “anomy.” This is especially so if one feels absorbed into large institutions, bureaucracies, and huge cities in which others do not notice one’s existence. Be it the faceless mob or the “loneliness of the crowd” (borrowing from Riesman), the individual as a decision-maker is dissolving away into anonymity and purposelessness. Indeed, some bioethicists and philosophers assert there is no such thing as a “self” or a “person” at all.

Throughout history, persons have defined others “out of the human race” by those finding them unpleasant or unuseful or simply inconvenient. What is new today is that their very existence is denied. Not only do political and economic powers intrude upon the individual and the family, the technologies that were to offer empowerment have actually increased marginalization. They trivialize even as they promise to raise the human condition.

No place is this sense of “coming apart” into incoherent pieces more evident than in a big hospital when one is desperately ill. The organization is bureaucratic. The practitioners are harried. Machines are everywhere. And, all of it comes at a cost which can seem bankrupting. The worst moments come when the treatments that offered relief and restoration are now deemed “futile,” and this in turn leads to life itself being deemed futile as well. It is not, but it seems so to the family, the practitioners and even the patient.

As wonderful as the medical sciences are, and such is certainly so, they also create awkward situations and overwhelmingly confusing circumstances. At one extreme, these can be easily addressed by simply terminating the individual who carries those difficulties, making the problems go away by making the person go away. At the other end of the bioethical spectrum, advanced biomedical technologies can be demanded that will draw out the dying process such that the physical body continues on as a “biological system” but with the individual seeming to be not otherwise alive.

In the hospital (especially when death seems imminent) two difficulties arise: finding meaning and direction (that is, having hope), and determining what to do practically. The only answer to the first is Christ. He offers comfort and provides strength. The Holy Spirit guides as one perseveres through problems and uncertainties. Late modernity, if nothing else, is marked by an immense amount of hopelessness. Christians cannot give in to such.

The answer to the second, the practical, at least in U.S. society, has been the use of Advance Directives to address the clinical moral conundrum. In the simplest terms (and the exact language varies across the respective states), an Advance Directive allows either the declaration of prior wishes (e.g. what is often called a Living Will, though the term is defined differently in different places) or the designation of a surrogate decision-maker. The latter is the far more effective approach.

John Kilner and his co-authors have developed a tool to make these decisions simpler – not easier – but more manageable. Further, Kilner’s work facilitates the reuniting of the actual clinical decision-making with the deepest concerns about meaning and life. It allows discourse about purpose, hope and heaven, and does so in a manner that honestly and respectfully helps people base that decision on trust in God.

At the end of modernity, the highest earthly compliment, given that life in this congested world is often quite complicated, may be that a tool works. The highest compliment for a Christian instrument is that it works in guiding the individual and community seeking to serve the Lord. This tool does both. May it be helpful to us.

Here is the website for the tool. https://medicaldecisions.info/#/. You can read more about this in Dr. Kilner’s own words below.

A Free Tool to Help You, Your Family, and Others Make Personalized Advance Directives and Medical Decisions

John F. Kilner

Bob had been deteriorating for a while and was recently admitted to the hospital. Mary was in a car accident and arrived in the hospital the same day as Bob. Both were in bad shape and needed major medical treatments just to have a chance to survive. The problem was that these treatments might end up making the dying process worse by adding more burden and suffering than benefit.

Bob’s and Mary’s families were distraught—and not just because of their family member’s medical condition. They didn’t know what their loved one would have wanted in such a situation. Their loved one had never made an advance directive.

Every adult should have one. Now it’s easy to make one—privately and free!

“What exactly is an advance directive?” you may ask. It’s a document that identifies who you want to make healthcare decisions for you when you become unable to make them. It also often gives some basic guidelines to that person to ensure that your priorities are respected.

Most people never get around to making one. Sitting around contemplating one’s medical decline and death is no one’s idea of a good time! But those who are wise will recognize why it’s so important to make the time. You don’t do it just for yourself—you do it especially for your loved ones.

It’s common for people unexpectedly to be in accidents—or else gradually to lose their mental ability—without having made an advance directive. So loved ones agonize over when to stop treatments that may be of little benefit. They are understandably inclined to overtreat. For example, they may leave their family member on a breathing machine—or unconscious with a feeding tube—for a long time before they die. They don’t want to let their loved one down by stopping too soon. In fact, their loved one may have wanted them to stop, but they never gave the word in an advance directive.

You can easily avoid causing that anguish by creating an advance directive now. And you can save your family much grief by helping all the adults in it to create advance directives. Believe it or not, getting together as a family to discuss the values and beliefs each person must clarify in order to make an advance directive is one of the richest discussions ever.

When my family had this conversation, we naturally explored issues of life, faith, death, and eternity that had never before been so easy to discuss. Each person doubly benefitted as we created our own advance directives and became equipped to understand and carry out one another’s. In hindsight, it stands out as the richest several hours we ever spent together as a family.

New Online Resource

Now those hours can even be a little fun! I’ve developed a new online resource based on over 25 years of teaching at Trinity and 45 years in the bioethics field. It’s located at MedicalDecisions.info and enables you to take a walk through a series of natural scenes, which prompt you to make choices along the way.

Its home page is shown above. If you go to this Internet address and select the “Advance Directive” button in the lower-right part of the screen, you’ll be transported to a pathway through a number of natural scenes such as this one:

Only snapshots of scenes can be shown here. But on a computer, you visually move down each pathway. When you click on a scene’s “Select Here” signpost (shown above), you’ll see what each branch in the path stands for.

When you choose one of the path branches, you’ll visually move down that pathway and into another natural scene. What’s happening is that you’re identifying the beliefs and values you want to guide health care decisions for you.

Three Short Videos

There are three places in your walk where you’ll be offered the opportunity to get more information to inform your decisions by watching a short four-minute video.

One video is offered if you choose the pathway indicating you want every technology offering the slightest benefit no matter how much suffering it causes. The problem with choosing this pathway is that people often don’t realize that some technologies in some situations can make the situation worse. It can be an idolatry of technology to use them—just because they’re there. They may only be adding burden and suffering to a death that can’t be avoided.

The result may be a later—and less peaceful—death. The value of avoiding overtreatment is explained in the video and you’re given the choice to take another pathway if you prefer.

A different video is offered if you choose the pathway indicating you might want to resort to medically-assisted suicide in certain situations. Why professional groups of physicians and disability rights groups consistently oppose this practice is explained, along with other dangers it poses. After these shortcomings are explained, you’re given the choice to take another pathway if you prefer.

The third video is one you’ll be offered no matter what set of pathways you take. A message will appear, explaining that which pathway you take will likely influence whether you die a little sooner or a little later. So—what is it like to be dead—so that you can include that in your calculus of pros and cons? There are many ideas about that out there. You’re simply offered here one view that can prod and help clarify your thinking. It’s just a few minutes long and contains a presentation of the gospel.

The gospel presentation notes that what your experience will be like after dying depends not on whether you’re good,    but on whether you’re forgiven. It portrays the biggest issue of your life as your relationship with God, who created you. Everyone has a natural inclination to go their own way—to reject God. For rejecting God, they deserve severe punishment. God is just, so that penalty has to be paid. But being thoroughly loving as well, God paid the penalty!

That’s what’s so good about Good Friday—Jesus Christ on the cross paying the penalty for our self-centeredness. On that basis, God offers us forgiveness if we are willing to receive it and follow the way of Christ. Those who are can look forward to a glorious eternal life that begins even now with the assurance of God’s love and guidance in the face of life’s worst challenges.

That’s the third video. No one has to view any of the three videos—they’re simply offered. But you can see how going through this resource with an unbelieving family member or friend—for example, to help them create their own advance directive—can be a great way to encourage people to consider their lives in eternal perspective.

Personalized Advance Directive

When you finish your walk down the pathways you will see your own advance directive displayed on the screen, ready to be printed or downloaded to your computer. If you download it you can type in your name, the names of the people who will be making decisions for you, etc. It will be a legally valid advance directive tailored to your priorities.

• You don’t have to pay anything,
• there are no ads to distract you,
• you don’t have to provide any personal information online.

The whole process of using this online resource is private.

If you need clarity regarding what values to plug in, as a Christian—for your own advance directive, or someone else’s—you can find those explained on a website called Faithful Medical Decisions.

Shown above, its home page on the Internet is: HarvestBible.org/medical. If you go to this address, you’ll have a choice between end-of-life issues and beginning-of-life issues (meaning how to have a baby if you’re infertile). If you click on end-of-life issues, you’ll have several options, the third bullet point being “Christian Perspective.”

If you click on that, you’ll find the biblically-based information you need, organized into seven relevant topics followed by a list of additional helpful resources. There you can also gain access to each of the three videos in the MedicalDecisions.info tool. Bottom line: You now have everything you’ll need to help people create an advance directive after creating or updating your own!

Current Treatment Decisions

Eventually, though, you’ll probably have to make actual end-of-life medical decisions for yourself (if you are still mentally able) or for a loved one. The MedicalDecisions.info tool can also be used to help you bring your values and beliefs to bear on those decisions. When you select “Current Decisions” rather than “Advance Directives” on the site’s home page, you’ll soon be given a document containing six key questions. The doctor will need to answer them before the implications of your values and beliefs for your treatment options can be identified.

Then you can start your journey down the pathway, where you’ll be making similar—but somewhat different—choices compared to the advance directive choices. Some pathways will lead you to an opportunity to see one of the first two videos. But every pathway will, at some point, give you the opportunity to see the third video. At the end of every pathway, you’ll receive a document. That document will help you explain to your doctor which treatment option you want—and why.

Bob and Mary may have lived their life well in many ways. But they didn’t finish it all that well, due to lack of planning. You now have the online tools to finish well. You and those you help can make advance directives and current medical decisions in harmony with your/their core values and wishes.

See all articles